Chronic fatigue syndrome (CFS) is a devastating, complex, and multifaceted
disease. It is also a disease which will explode on the national scene. Someday,
the nation will want to know how CFS was handled. As we used to say on the
playground, this “dog, will have its day.”

CFS research is not just a medical or scientific issue. CFS has been at the
center of an ideological tug of war. Contrasting ideologies, commercial
interests, sociological perspectives, and gender attitudes have often clashed
over CFS. And when it comes to federal expenditures, these clashes aren’t over a
very large pie. The National Institutes of Health (NIH) oversees roughly 17,000
employees. It stands to reason, that the diverse societal and cultural attitudes
towards CFS – both positive and negative -- may be reflected within the NIH
itself.

Many CFS advocates do not believe the NIH takes CFS seriously. These
advocates cite several arguments to support this view. Funding from the NIH for
CFS research is among the lowest of any disease, 6 million dollars per year.
Yet, this didn’t appear to be the main concern. Other advocates cite past
comments from NIH officials as illustrative of a subjective bias toward CFS.
Many advocates believe the alleged bias has laid a foundation of skepticism,
permeated the agency, discouraged research efforts, and undermined acceptance
and dissemination of key research findings.

Since 2000, a broad, fairly robust group of researchers who proposed a
biological/organic model for CFS have received almost no support from the NIH.
Some CFS advocates believe these researchers have submitted high-quality grant
proposals. The problem with funding, they believe, is not with society or
science – but within hearts and minds of the NIH itself.

However, review panels are presumed to be reflective of incoming funding
applications. If so, few, if any, CFS applications dealing with topics outside
of psychiatry, neurochemistry, and behavior were received for CFS in 2004. So,
what has happened? How did we get here? Do we want it to be this way? And if
not, how do we change it?

In addressing those questions, we must build on the positives of the existing
program at the NIH. We must also acknowledge the problems.

Administration

Despite being a man with CFS, I believe the Office of Research on Women’s
Health is the best place for chronic fatigue syndrome. One of the primary
concerns of CFS advocates is that emerging illnesses which predominantly strike
women, are swiftly categorized as psychiatric/neurochemical disorders.
Traditional and cultural beliefs that women are likely to misperceive symptoms
or overreact to stress may play a role in such categorizations. If so, this is
the office that would be likely to not blindly support these theories,
especially to the exclusion of other viewpoints. Dr. Pinn (interview will be
released later) has expressed a lot of concern about this issue. While one could
argue the ORWH hasn’t produced results, the fact is, this is the best office for
CFS at the moment (if, at the least, no other institute seems to want to take
CFS)

The Trans-NIH system

Since CFS was placed in a Trans-NIH system, funding levels have dwindled. One
concern about the Trans-NIH system is that certain institutes will shun their
role in addressing CFS. Or worse yet, they may refuse to accept key research
findings for CFS that fall in their domain. However, the Trans-NIH system has
been effective for women’s health research. Dr. Pinn has been able to maximize
women’s health research by using a very savvy and pragmatic approach, working
across institutes. One could argue that the same system could work for CFS.
At any rate, thus far, it hasn't.

Communication and Cooperation

By the late 1980’s and throughout the 1990’s, communication between the CFS
community and the NIH broke down. When an internal search for a role for herpes
viruses didn’t pan out, many CFS advocates felt fatalistic and biased attitudes
toward CFS spread throughout the NIH. Whatever the cause, communication and
cooperation between the NIH and the CFS community became rare.

This report is a historic first step. NIH officials stepped forward to share
their vision for the CFS program and address concerns. Both the CFS community
and the NIH seem to understand that communication and developing a cooperative
relationship is needed for success.

Addressing the concerns about Scientific Review

A CFS advocacy group has made a request that the Health and Human Services
(HHS) take a look at scientific review and chronic fatigue syndrome. A solid
evaluation of the handling of past CFS grant proposals, as well as the system of
CFS review, would require strong knowledge about proposed models for CFS.
Despite the steep learning curve, fulfilling this request would have positive
benefits for all.

I strongly believe the NIH would be amenable to such a request. The NIH
officials I spoke to seem to want to establish public confidence in scientific
review. A periodic external review by the HHS would be one way to accomplish
this goal. In fact, a periodic review for certain illnesses that are strongly
subject to competing ideologies and predominantly affecting minorities, is not
only a good idea; it is common sense.

Centers/Intramural Research

The HHS CFS Advisory Committee has made a request for 5 centers of excellence
to be established for CFS research and clinical care. If implemented impartially
( a big if in the CFS research arena), the centers could yield a systemic
approach to CFS. For instance, one center could advance knowledge of lmw Rnase
L, another circulatory dysfunction, another metabolism, another
neurobiology/ANS, and yet another behavioral research. All that is required to
begin to fulfill this request at the NIH is one thing: commitment.

Emerging technologies are difficult to fund reliably with typical small,
piecemeal grants. It takes long-term commitment and continuous funding. An
established intramural lab, or a center, is what it will take to see high- tech
research succeed. If there is a societal stigma toward CFS that tends to yield
poor quality or subjective grant proposals, then intramural research is an
attractive option. .

Technology

Two words appear to be the contemporary buzzwords of choice at the NIH,
“integrative” and “multidisciplinary”. These words often articulate a strong
sentiment to integrate complementary and mental health care into biomedical
research.

Women’s health encompasses many systemic illnesses which share similar
demographics: lupus, rheumatoid arthritis (RA), CFS, fibromyalgia, and others.
While some believe”integrative” and multidisciplinary efforts will revitalize
the understanding these illnesses, I believe emerging technology will lead the
way. RNA and DNA profiling, the human genome project, proteomics, spectrography,
and computer scanning technologies offer incredible promise. If the ORWH could
do one thing to break barriers in women’s health research, it would be to make
sure these technologies are being applied to these tough-to-crack illnesses,
including CFS.

The Question of the “right questions”

One of the most interesting themes repeated by NIH officials was that
scientists must ask the “right questions” to stimulate solid scientific
progress. However, one could make that point that the claim of knowing the right
questions is, in and of itself, a rather dubious and presumptive idea.

NIH officials pointed to output of the 2003 conference, as well as the
recently-issued 2005 RFA ( Request for Applications), as an example an effort to
get CFS back on a scientific track. However, many CFS advocates I spoke to saw
the 2003 conference and the RFA as an attempt to narrow the focus from systemic
to psychiatric models, despite an diplomatically-worded emphasis on
neurobiology.

Stiff warnings were written into the conference output, “Attempts to separate
mind from body, psyche from soma, and psychiatry from medicine do not succeed…”,
“because these conditions are integrative, mind-body, multi-disciplinary
disorders”, and “brain is the organ that controls and regulates all action and
interaction between the diverse body systems affected in CFS…Thus, it could
prove an integrative model in which to explain female predominance, acute onset,
uniformity of symptoms, absence of prominent findings on physical examination,
substantial disability, and altered perception that exist in CFS and the
multiple conditions with which it overlaps….” These comments reflect
the philosophies of the two chairs chosen by the NIH to head the conference.
It is not difficult to suggest that, therefore, these philosophies also reflect
those administrating the conference as well, and the representatives of the
Trans-NIH workgroup. If so, the NIH has allowed a very narrow view
of CFS to become its own view of CFS. Not only would that be wrong,
given that their are other views available,
but it would be out of character for a women's health agency.

Is a narrow view of CFS that is holding back CFS funding at the
NIH? Possibly. First, the model proposed by
the 2003 conference constitutes a very narrow segment of the
scientific interest in CFS. Second, these conference
constitutes a view of CFS that, thought very carefully worded and
emphasizing the biology of misperception, are psychiatric.
Third, none of these comments are exclusive to CFS, having been
proposed for a wide variety of women's emerging illnesses, from
fibromyalgia, to TMJ, to stress. Fourth, exclusive findings in
CFS are available for representation at the conference, and these
findings were excluded. Taken together, that is a lot of
evidence that, at the time the conference, was being planned, the
NIH had endorsed a favored model for CFS.

Perhaps the greatest divide between the CFS community and the NIH were their
opinions as to the state of CFS research before funding levels for CFS began to
plummet in 2000. Many NIH officials said the conference and RFA were
spurred by a lack of objective research leads for
CFS. Past CFS research had turned up nothing of value. In contrast, many CFS advocates
and many scientists who have failed to receive funding are more accepting and even enthusiastic
towards preceding research findings for CFS. Researchers like Peter Rowe (J.
Hopkins, circulatory dysfunction), Klimas/Robert Suhadolnik (Temple U., lmw
Rnase L), and Leonard Jason (DePaul, sociological/behavior) have all found
unique, exclusive answers to CFS. These researchers have not been funded by the
NIH since the NIH began stating that a "new" group of scientists were needed for
CFS research. The narrow choices made in constructing the ORWH
conference in 2003 may yield more answers about a widespread view of CFS at the
NIH, a view that is holding CFS research back, funding levels down, and
excluding certain researchers from funding, than about the pathology of the
illness itself.

Note: The CFIDS Report would like to thank the officials at the NIH who
volunteered their expertise in this report. Dr. Eleanor Hanna spent much time
answering questions about the CFS program. Dr. Terrell Hoffeld also spoke to the
CFIDS Report at great length about the issues pertaining to scientific review,
lending his expertise and knowledge. Dr. Donna Dean, who managed the CFS program
at the NIH during an important time of transition, shared her extensive
expertise in CFS as well as a wealth of historic data.

Dr. David Goldstein declined to respond to requests for an interview with the
CFIDS Report. Dr. Stephen Straus, through a spokesperson at the NIAID, also
declined interview, citing a general disengagement from the efforts pertaining
CFS research at the NIH.

A multilevel set of scientific reviews for this report was volunteered by
persons with scientific expertise in the areas discussed. My heartfelt thanks
are extended to those who assisted in that endeavor.

A handful of advocates also spent time with the CFIDS Report, lending their
assessments of the NIH program. Pat Fero from the Wisconsin CFS Association
provided information on review panels and the CFS SEP, as well as knowledgeable
insight. John Herd, Kate Duprey, and Jill McLaughlin also spoke with the CFIDS
Report at length about their concerns and hopes for the CFS program and
advocacy.

The CFIDS Report allows the use of these articles by any advocate or
charitable organization, provided the articles are not changed in any way. Craig
Maupin can be reached via email: editor@cfidsreport.com